In Their Own Words – Autism in the News

This “In Their Own Words” is by Pranita Sookai, a junior at New York University, majoring in Journalism and Economics. She is a recipient of the JPMorgan Chase Smart Start Scholarship.

People sometimes look at the world as if they were staring through a view finder. They are disconnected. They step away from the lenses with a generalized and often inaccurate understanding of the community in the distance. The people being observed here become ingrained in this broad picture, but their reality is not seen.

Greater awareness would help the public connect to these communities, such as to the community of families affected by autism.

Autism, one of the most prevalent childhood disorders, affects more children than juvenile diabetes, childhood cancer, and pediatric aids combined.1 Yet, autism often goes unnoticed. It is hardly picked up by the mainstream media, and because of this, their group suffers from misrepresentation in the public eye.

Autism is a general name that groups together a complex set of brain disorders known as Pervasive Developmental Disorders, or PDD. This group includes Pervasive Developmental Disorder – Not Otherwise Specified, Asperger’s Syndrome, Rett Syndrome, and Childhood Disintegrative Disorder.

Autism usually appears during the first 18 to 36 months of a child’s life. Because the symptoms vary, the paths to confirming a diagnosis vary as well. The main signs of autism involve difficulties in communication, social development, and the development of routine behavioral patterns. Children with autism can be verbal or non-verbal. They have difficulty expressing emotions, understanding the emotions of others, and having a conversation. They also form behavioral patterns, which include repeating words, or obsessively following routines. In some cases, the children are identified as having developmental delays before obtaining a diagnosis. Although there is no cure, an early diagnosis often results in dramatically better outcomes for autistic individuals because they can begin therapy sooner. Unfortunately, sometimes a child’s diagnosis of autism is delayed.

Because there is no medical test for autism, diagnosis is based on the observation of a child’s behavior, as well as on educational and psychological examinations. There is also no know specific cause for autism. But, abnormalities can be seen in an autistic child’s brain structure when compared to the brain of a non-autistic child. Currently, researchers are investigating the suspected triggers of the disorder, which include genetic inheritance and environmental factors.2

The stark severity of the disease can devastate families, and can be devastating to the individual’s lifelong development. Michael Giangregorio is the Chair of Autism Speaks Long Island Executive Committee, Chair of the Leadership Council, and a Board Member of The Elija School. He is also the father of a child who suffers from autism.3

When asked what his greatest concern is for his son, he said, “What will happen when I die? Who will look out for my son’s needs? Who will ensure that he will remain safe when I am gone? He is nonverbal, and needs help with everything, even the simplest tasks most of us take for granted.”

Families who are affected by autism are concerned with the future of their children. They want to know about the things that directly affect them. This includes information on medical developments, legislation on autism, and funding for autism treatment, research, and programs.

Yet, the intersection of the mainstream media and autism occurs in a way that does not really touch on the concerns of the autism community. Instead, journalism overlooks the important developments. To the general public, the concerns of these families are not conveyed, and the public therefore maintains an inaccurate image of these people. The stories published are subject to sensationalism and an emotional bias. Even more so, some families affected by autism don’t have access to the news they need about their group.

Looking through some of the main news outlets– The New York Times, The Wall Street Journal, The Washington Post, NBC, ABC, CBS, and Fox– there is little coverage that is relevant to the community itself.

According to Michael, the mainstream media misses the mark when covering autism. He said, “When many people think of autism they think of Dustin Hoffman’s character in Rain Man. The media needs to help get the word out. It needs to help break the stereotype. It needs to help educate the general public.”

Stereotypes about people with autism are not uncommon in society. In his work on stereotypes of autism, Douwe Draaisma acknowledged that most of the public’s understanding of autism comes from the way it is represented in novels and movies. In an example of autism stereotypes, he describes Sigourney Weaver’s character in Snow Cake. He says, “We understand why Linda is carefully aligning shoes in the hallway, for we all know that autistic people hate it when things are in disarray. We understand why she is fascinated by the spinning of a shiny coin. We understand why she throws a temper tantrum when people try to touch her.”4

An article published by USA Today does nothing to correct the inaccurate images that the public maintains about autistic children. It describes a new airport check in program, where autistic children can learn about flying.5 But, the article fails to acknowledge that autism can take many forms, and that some children diagnosed with autism have relatively mild symptoms. Instead, it assumes that autistic children generally are not capable of handling flying, and they need to be trained so that when they reach adulthood, they would have had the experience. The article belittles them.

It quotes Wendy Ross, a developmental pediatrician at Albert Einstein Medical Center. She says, “New or unexpected things that have lights, sounds, movement can make them more likely to get upset or have a tantrum.” She later continues, saying, “Many families with autistic children are reluctant to fly and often drive long distances for family vacations. It’s a large portion of the flying public to ignore.”

This piece of autism news does nothing to let the public truly connect to the community. It does not put the readers in touch with the autistic individual or his family. Instead, it gives a superficial account, and redistributes throughout the public the stereotype that autistic people are generally incapable and emotionally unstable.

When looking at other types of autism news, the coverage seems to linger along the side of soft, over-romantic, and nonetheless irrelevant. Although emotional stories are nice to hear, and can allow the public to see the great strides that autistic individuals make, the autistic community faces a lack of media coverage that is truly relevant to their needs. An example of this is the lack of reporting on changes in autism health care coverage. Instead, the media focuses on sensational stories. Here, there is an imbalance between what the community wants to see in the news, and how journalism portrays the community to the public.

A recent New York Times’ article6 on autistic children falls into this category of sensationally heart-warming stories. It focuses on the interaction of therapy dogs with autistic children. The article describes the positive effects that dogs can have on improving the communication skills of moderately to severely autistic children. However, the article only highlights two residential autistic centers, and acknowledges that success is found on a case-by-case basis.

In this instance, journalism is not serving the autistic community well because it focuses on the things that don’t apply to most autistic individuals and their family members. Individual success stories, although a testament to human dedication and progress, is relatively extraordinary. When the media focuses on these occurrences, it leads to sensationalized and biased coverage.

For Michael, the mainstream media does a poor job of reporting on things that are important to his community. He says, ” Knowing your rights as a parent of a child with autism or as an individual with autism is the keys to success. For example, in New York State, the Department of Education just decreased services for speech and language from 5 times per week to 2 times per week. This happened without any hype. It just passed under the radar. This is so important to our community yet it was only picked up by one local television station.”

The television station that did cover this key piece of news is CBS.7 Because funding and legislation about autism heath care coverage affects the entire community, reporting on these events is critical to serving the group well. According to Michael, “Autism receives less funding per incidence than any other disorder. For example, juvenile diabetes affects 1 in 500 and receives $156mm in funding. Autism affects 1 in 110 and receives $79mm in funding. With a NIH budget of $30 billion in 2008, $118mm went directly to autism research, which represents .3%. ”

The lack of news about funding and legislation becomes a greater problem when autistic individuals depend on the mainstream media for updated information. If the media does not satisfy this demand, people in the community who do not have many other resources become disadvantaged.

Unlike most of the journalism about this community, stories on medical advancements are more widely covered and directly address the community’s concerns. Newsday, Business Week, and Time magazine are a few outlets that covered the recent development of a brain scan that can possibly detect autism.8 The researchers used a brain imaging test that shows the connections within the brain in order to distinguish between an autistic brain and a non-autistic brain. They successfully identified the autistic person more than 90 percent of the time.

A breakthrough like this is a critical piece of information for this community because it can lead to the early detection of autism. In this case, the mainstream media was the main component in passing along this information. Generally, journalism serves the autistic community well when covering these important medical advances.

With an increase in reporting news that is important to the autistic community, the public will have a greater understanding of who these people really are. Their concerns will be more widely acknowledged, and they will have more access to the information they need.

To better serve the community, mainstream journalists need to move away from sensationalist and stereotypical reporting. They need to fill the gap between the community and the rest of the public by digging deeper, and covering topics that appear in specialized publications such as Psychology Today and Scientific American. By doing this, the public and the autistic community will benefit from more meaningful and relevant journalism.

Instead of looking at the community from a distance, the public will be able to look inside and connect with its people. Journalism will no longer act as a view finder, but will allow the public to travel into the communities, and learn about their realities.

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I can’t believe how poor the mainstream media is with regards to reporting and doing investigations, whether it being autism, on stories period. Whether it being the bias’ or the amount of special interest greed involved with these news outlets its getting very sickening.

The mainstream public needs to have a much better understanding of people who are suffering from auutism. Not all people who are diagnosed with autism are like Dustin Hoffman’s character in Rain Man, even though I’ve never seen the movie because I’m not much of a movie buff.

Well done Pranita! You insightfully discussed so many salient issues. Thank you.

As a mother of a chronically ill and severely affected non verbal child I feel my son’s issues have been completely ignored by both mainstream media and the majority of the autism research community. All those “heart warming” stories are nice but they often leave the reader the impression that all it takes is love and understanding for those with autism to live a quality life. If only! I would like to see more stories on the all too real suffering of severely affected kids as well as reasons why there few interventions to help them.

I don’t know other parents but I have had it with the 90th multi million dollar early identification blood or MRI test. What is being done to help kids like mine now? Almost nothing. All helpful interventions I have found for him are the result of endless hours of my own research on the internet, attending conferences and cold calling researchers. It should not have to be this difficult.

I’m with you Katie re: the feel good, heartwarming, hard work, loving parents stories or, even worse, like-minded parents, for that matter. I cannot stand it when a parent takes sole credit for their child’s improvement.

Clearly, you and I have different children whose UNDERLYING ASD-disease states are very, very different. We have been at this exactly the same time (almost to the month). I adore and respect you so much (and your parents). I have learned so much following your child’s story all these years (and everyone’s). Never in my wildest dreams would I call you anything other than an amazing mother/researcher/advocate/person.

I am literally furious if anyone dares to call me a “good mother” or “see how far your child has come, due to all your hard work.” I go for it, as it is an opportunity to teach… ME: “When you call me a good mother – what is the other side of that coin? What does that say about mothers of severe children?” Then, I go off re: subtypes, medical issues, trajectories, you name it. I go off on all the kids I know of – and how different every aspect is – and some of the children I know who have recovered – including one where the mother screams at all of her children 1,000x/day – and some of the very severe children I know whose parents have done everything for years on end.

I am convinced that single most important detail in all of this is the child’s underlying disease state and the resulting ability to respond to treatment(s).

The “good mother” bunk the media portrays is so hurtful to us all (and gives the population to ammunition to moralize).

I will not accept the “good mother” (or the “bad mother”) label for any of us – or it’s implications. I will only accept both terms when they are both used for for ALL OF US.

We area all simply doing our best within the confines of our circumstances (and our circumstances, children and their underlying disease states are all so different – a fact the media glosses right over).

The mainstream media loves the happy ending/silver lining; hence all the “Rain Man” stories – idiot savant abilities in ASD individuals. Meanwhile, the percentage of ASD individuals that have idiot savant abilities is quite small (I’m not writing down the percent I remember – as it would likely not be accurate – I’m not looking for this statistic at the moment, but have read or scene low statistics presented a number of times).

This idiot savant subset presented by the media is so extreme – that an old friend from college (without children) who lives far away – when told in a phone conversation that my then 5 year old son was on spectrum (diagnosed at 2) – she brightened and told me not to worry and asked what was his idiot savant ability. I explained that he didn’t have an extreme ability (or even a special interest for that matter). She told me I was wrong and I just hadn’t found it yet?????

I explained that even some of my NT friends’ kids have deeper interests than my child (e.g., kids who REALLY like superheros or Disney Princesses) – and that this type of child (whether NT or ASD) will always have special interests, but they will morph and change over time (much like my NT younger child – who was only a toddler at the time – who has gone from Dora, to The Wiggles, to pretending to be a rock star, then on to coloring non-stop, first anything, then NHL hockey logos/rinks/players, to Olympic flags, back to the NHL, to world cup teams/soccer games/literally pictures of soccer action/red cards/you name it, to coloring the Tour de France – now he’s into Club Penquin and being a hockey goalie (and I’m grieving almost two years of non-stop coloring that has suddenly stopped – as we are not in control of his special interests – just what he is exposed to – and the older he gets – the less we are in control of his exposure – we did NOT expose him to Club Penquin – that crime was done on a play date). So, our NT child is Mr. Special-Interest, but always developing, moving and growing (whether we like it or not – you’ll be happy to know his screen time is limited to 15 minutes a day). He is NT. Duh??? (you all know this – this is nothing special – this is normal).

I tried to explain, that when ASD children have special interests they are usually more intense than NT kids’ special interests and may not change an morph over time (or may not always be age appropriate). But, certainly while many ASD children have special interests (but not all), most do not have extreme/incredible abilities (e.g., numbers like the fictional Rain Man, poetry & prose like Tito Mukhopadhyay, art like Chris Murray). I tried to explain that my then five year old ASD child is a generalist and really just likes “new”: new toys, new anything and get’s bored as soon as he “learns” a toy (or anything for that matter) – he doesn’t have the imagination to build a story line, nor does he sit and stim on a toy, it’s just garbage (and certainly, on top of his ASD diagnosis, he has a huge dose of ADHD to go with it). I tried to explain, that if he had a special interest – it would develop on it’s own – that I can’t control if he has a special interest or not (just his exposure to the world). And certainly, I cannot control if he is to be extremely gifted in an area. An aside – You’ll be happy to know he’s gone on to be a fantastic reader (but again, no real special interest – just reading for reading’s sake).

She insisted that I was absolutely wrong, that all ASD children have extreme abilities and insisted that I needed to find his special interest so that his idiot savant ability could be nurtured – by me, the person solely responsible for all aspects of his personality/ability/failings. Despite the fact that she was faced with the evidence: I had been his mother for five years and I had been reading all about ASD for three years non-stop (and I might have more knowledge about ASD more than she did). I simply gave up and changed the topic (rather than tearing her head off).

Where did she get this unshakable knowledge from? The media.

Don’t even get me going on the deliberate ignorance of the media (and therefore the public) about ASD science: Epiginetics/medical issues VS. simply 100% genetics/behavioral/better diagnosis tripe that the media loves so much… You’ve heard enough from me and I write too much as it is, with way too many run-on sentences (like this one). I need an editor (or should repeat high school English/get out a grammar guide).

Pranita Sookai – thank you so much for your thoughtful (and well written) article. Please stay with our community; we need you desperately.

Thank you, Pranita, and all of the above comments from Sarah, Katie, and Adam.. I’m a loving grandmother of a precious 4 year old autistic boy… The love I have for my grandson is immeasurable… This article and your comments actually show me that there are more severe ASD cases than what i see everyday, even in the Autism Speaks posts… It seems all I see are stories of Asperger’s, or other high-functioning ASD issues… I wondered if the little guys that still don’t speak, that are still not potty-trained, and that have some developmental delay as much as two year to 18-month olds, when they are 4 to 5 years old, just go un-noticed, as if “hey.. that’s your problem, your job” (referring to mom, dad, grandparents)… I’m not a well-educated person that knows how to express myself so eloquently as other writers, but, i did want to thank you all for letting me know that there are other children out there, and that you struggle as much as we do… after a very difficult “issue” with my grandson’s special needs teacher, i needed this… thank you all…